Down Syndrome Family Network celebrates 10 years of advocacy

The Down Syndrome Family Network (DSFN) celebrated ten years of advocacy in Trinidad and Tobago on the United Nations (UN) World Down Syndrome Day on Monday.

The organisation celebrated at the Hyatt Regency Hotel, Port of Spain, with several government ministers and self-advocates speaking on the importance of societal inclusion of people with Down syndrome in the country.

Down syndrome is a condition in which a child is born with an extra copy of their 21st chromosome causing physical and mental developmental delays and disabilities.

In December 2011, the UN declared March 21 World Down Syndrome Day and it is recognised internationally as a day to raise awareness and advocate for the rights, inclusion and well-being of people with the chromosomal condition.

This year’s theme is, “What inclusion means to me.”

Speakers at the Hyatt on Monday included the Prime Minister’s wife, attorney Sharon Clarke-Rowley; Minister of Education Dr Nyan Gadsby-Dolly; Minister of Social Development and Family Services Donna Cox; and Minister in the office of the Prime Minister Gender and Child Affairs Ayanna Webster Roy.

The event also featured international speakers including National Down Syndrome Congress (NDSC) president and CEO Kandi Pickard, and NDSC executive director Jordan Kough, among several local and international self-advocates.

In her speech, Gadsby-Dolly said “The people of this country are truly fortunate to have organisations such as the DSFN to provide needed advocacy, support, resources and information to parents, caregivers and the wider society.”

She said this year’s theme reflects the UN Convention of the Rights of Persons which calls for full and effective participation and inclusion in society.

Gadsby-Dolly referred to the education system’s ability to serve all equally, saying, “Though the system is in place, a lot more work is required for it to be effectively operationalised.”

She said Down syndrome and special needs did not benefit from full and effective participation and inclusion in society, but the ministry will do its best to provide the equity of educational opportunity.

Rowley, the event's feature speaker, said the induction of the Convention of the Rights of Persons in 2006 created fundamental change towards the treatment of people with disabilities.

“The UN in TT, mindful of not leaving anyone behind, has embarked on a review of existing legislation – the Equal Opportunity Act, the Education Act, the Mental Health Act – in order to harmonise domestic law with the convention and ensure that there are stronger provisions for equality and non-discrimination in the workplace, school system and public health system.”

She congratulated the DSFN on its milestone and said it was the only organisation in TT that actively provided support and education and which advocates for the rights of people with Down syndrome and their families.

The network, she said, has 273 members and partners with other ministries including the Ministry of Health, and the Attorney General.

“Our responsibility is to ensure that the one in every 700 children who are born each year worldwide with that chromosomal disorder are included in every facet of our life.”

Cox said the Ministry of Social Development continued to maintain strategic partnerships with public and private entities, as well as advocacy groups such as DSFN.

She said more work needed to be done to address the current inadequacy of primary research and usable data on the disability sector in TT.

“Data on people with disabilities in TT, derived from the 2011 population and Housing Census, estimated that there are approximately 52, 244 people living with a disability. This represents at least four per cent of the total population.”

She said the ministry is currently reviewing the national policy on people with disabilities and reviewing the legislation to ensure the alignment with the UN Convention.

Cox also said the ministry would continue to partner with the Pan American Health Organisations (PAHO) as it implemented a full joint programme from March 2022 to December 2024 on several projects.

Self-advocate and 12-year-old owner of Rochelle’s Sweet Treats Rochelle Persad said inclusion, for her, means being valued in society.

“It means being able to participate in activities. I have experienced inclusion in many areas of my life. The first area is in my family life. I am only 12-years-old but I assist my mom in the kitchen. I also assist my family by doing chores.

“I also enjoy shopping a lot because I get to buy things for myself with money I’ve earned.”